I cannot sleep at all

Dont be afraid to question your doctor if it's not working. Why do I need X? What did you test? Where is the proof? I don't know your doctor, but if he's 1.5 years in without major success, it's time to change. I would follow Freddd or Rich's protocol as closely as possible. They have spent a lot of time working with people to get them where they are at.

Get someone to help you if you can. Someone who can help you wade through the symptoms and help you with titration. If not, be very detailed with your tracking. Depending on your illness and organizational skills, it may not be easy to track, monitor, and adjust your doses on your own.

I like his methods, they worked and are logical to me. But I am an engineer, not a doctor. So maybe it's too practical for some .

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I agree with this. I haven't stayed vary long with anyone lately. If I don't feel I am doing well, I jump ship. The longest has been 4 months lately. I don't have time for them to not get it right. Just starting a new doctor. He wants to get my gut fixed so I absorb stuff better. I would think I am absorbing if I am getting such negative symptoms with the supplements.

I have done methylation panel, and yasko and 23 and me. I do have cbs and I feel it is cleared. But I have switched doctors a couple of times because I felt worse with what they wanted me to do. You think 1000 is too high. I did not realize that. I am going to go with bare minimun tomorrow and try for lower salicytes. I was eating almonds , macadamia nuts, sardines in olive oil and they are all high. Now I need to figure out what to eat for breakfast. I was eating sardines with olive oil for a long time. I wonder if sulfur can get too low? I just did a UAA test and want to do a UTM/UEE test to see where I am at. I also need to add some vegetables and carbs in too.

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Hey freshveggies--I can see how hard you are trying to figure this out, and I know I would be tempted to do the same thing if I was in your shoes. I have major insomnia problems, off and on, (mostly on), so I know how exhausting that can be. That said, I want to give you my 2 cents for what I would do (and what I often do do) when I am in your situation.

The first thing I'd do is SIMPLIFY the supplement routine. In fact, would probably stop most, if not all, of the supps and stay off them for at least 3 days, so as to get a baseline for where I was without them.

And in the mean time, I would eat what I felt like eating, what I had an appetite for. I have gotten my knickers tied up in knots about food way too many times, and I know for sure that that WILL make you crazy.

Eventually, after getting a bit more stable, I would begin to keep a food and supplement journal, adding each supp in one by one and writing down how I felt an hour after each meal and after each supp.

Lastly, I would give myself a foot massage before bed after soaking them in epsom salts. I would listen to music that I like, so as to keep my mind from obsessing about not sleeping. I would massage (or needle) the following acupoints: yin tong (right btwn the eyes), do-24 (just inside the hairline) and spleen 6 (4 fingers width up from the inside of the ankle). Acupuncture and acupressure has often been my saving grace and those are the best point to use for sleep. Good luck to you!

Hey freshveggies--I can see how hard you are trying to figure this out, and I know I would be tempted to do the same thing if I was in your shoes. I have major insomnia problems, off and on, (mostly on), so I know how exhausting that can be. That said, I want to give you my 2 cents for what I would do (and what I often do do) when I am in your situation.

The first thing I'd do is SIMPLIFY the supplement routine. In fact, would probably stop most, if not all, of the supps and stay off them for at least 3 days, so as to get a baseline for where I was without them.

And in the mean time, I would eat what I felt like eating, what I had an appetite for. I have gotten my knickers tied up in knots about food way too many times, and I know for sure that that WILL make you crazy.

Eventually, after getting a bit more stable, I would begin to keep a food and supplement journal, adding each supp in one by one and writing down how I felt an hour after each meal and after each supp.

Lastly, I would give myself a foot massage before bed after soaking them in epsom salts. I would listen to music that I like, so as to keep my mind from obsessing about not sleeping. I would massage (or needle) the following acupoints: yin tong (right btwn the eyes), do-24 (just inside the hairline) and spleen 6 (4 fingers width up from the inside of the ankle). Acupuncture and acupressure has often been my saving grace and those are the best point to use for sleep. Good luck to you!

HI Dreambird, thank you for taking the time. That is some good advice. I have stressed over food for years. Before when I would gain weight for no reason. Now because I have genetic snips that say what I can and cannot eat. I am tired of it all. I feel scared about what I eat. Now I was trying to cross reference low sulfur with low salicytes. Not much to eat. Then I ate some sun butter and it could be a tyramine problem for me. I just have to let some of it go. I really am not stressed out, just really tired and hungry.

Your carnitine is likely to be 10 times more stimulating than any ox bile.

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Thank you. I needed to hear that. The doctor made is seem like he really wants ox bile to work for me. I am going to take a break from it all and clear out my system. Maybe I have gotten toxic. I am real sensitive to supplements.

Now I was trying to cross reference low sulfur with low salicytes. Not much to eat. Then I ate some sun butter and it could be a tyramine problem for me. I just have to let some of it go. I really am not stressed out, just really tired and hungry.

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Feeling scared about what you eat is not going to be helpful. Just reading what you have written about your food conundrum makes me loose my appetite.

Eat what you like and enjoy it! YUM!
Here are some FRESH VEGGIES for you. Take your pick.

I am not sure how I can let go and eat them. There doesn't seem to be a green vegetable left to eat that isn't high is sulfur or salicytes. There is celery or carrots and when I mentioned this before, there was a reason that those were not good either. I don't usually eat bananas but they seem to be low sulfur and low salicyte. Not a veggie though. I did eat rice for dinner with ghee and then a rice cake with sunbutter. Would have liked a little meat, but we didn't cook up any as the rest of the family had pizza.

I think it's okay, possibly even preferable(?) to start one methylation supp at a time -- then you may be able to pin point the one component that's giving you trouble.

By the way, there are several folks with CBS issues that found that eliminating sulfur-foods and/or supps wasn't necessary, and in fact things like taurine actually helped. (Taurine can also be calming, like glycine...)

I am not sure how I can let go and eat them. There doesn't seem to be a green vegetable left to eat that isn't high is sulfur or salicytes. There is celery or carrots and when I mentioned this before, there was a reason that those were not good either. I don't usually eat bananas but they seem to be low sulfur and low salicyte. Not a veggie though. I did eat rice for dinner with ghee and then a rice cake with sunbutter. Would have liked a little meat, but we didn't cook up any as the rest of the family had pizza.

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Nice to hear you tried some rice. You might try increasing it more and see if that helps, at least at the dinner meal.

Green beans and regular ol' peas are low salicylate foods, as is spinach, and it all depends on how much you eat. If you look at some of the salicylate lists online, it can sound like some things have astronomical amounts, like the spice dill for example. But the amount listed is for 100 gram serving. That takes a TON of dill to reach that weight -- a 1/4 teaspoon is going to have minimal salicylate/phenols.

My intolerance got bad because I was eating raisins, currants, nuts, seeds, dried cherries, etc., usually in my oatmeal (dried fruits are almost all very high in sals, with figs the exception). Also honey is very high.

I'd have "Larabars" every once in awhile thinking they were a healthy snack. They are, for people who haven't worn out their sal/phenol detox pathways, but for someone with salicylate intolerance, they're almost the worst thing one could eat. One of my worst days (and best in a way, because it helped confirm the problem) is when I ate a Larabar made with almonds, dried cherries, and dates. I had two of them, and thought I wouldn't make it through the night.

There are also things you can take to help improve salicylate/phenol detoxification: Glycine helps (a study can be found using a google search), and also the supplement calcium d-glucarate. Also there's a supp called "No-Fenol" which helps some handle sals/phenols better.

I think it's okay, possibly even preferable(?) to start one methylation supp at a time -- then you may be able to pin point the one component that's giving you trouble.

By the way, there are several folks with CBS issues that found that eliminating sulfur-foods and/or supps wasn't necessary, and in fact things like taurine actually helped. (Taurine can also be calming, like glycine...)

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I used to take taurine and it helped. I am getting a UAA test to see where my tuarine and ammonia levels are. I think it shows sulfur too. I have been low sulfur for too long is my feeling. Partly since I have switched doctors and they kind of want to start at the beginning.

Thank for the list of food.

I am cross referencing them to low sulfur and see what I can get.

Do you know if anyone limits foods based on MAO status? Low tyramine foods?

I used to take taurine and it helped. I am getting a UAA test to see where my tuarine and ammonia levels are. I think it shows sulfur too. I have been low sulfur for too long is my feeling. Partly since I have switched doctors and they kind of want to start at the beginning.

Thank for the list of food.

I am cross referencing them to low sulfur and see what I can get.

Do you know if anyone limits foods based on MAO status? Low tyramine foods?

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Hi freshveggies. I haven't posted much. I have many of your same defects, incl MAO++ (need to create a profile for self) I've looked at Yasko and Heartfixer re MAO foods to avoid, couldn't find any info except re fast cycling neurotransmitters, and you're already taking the suggested lithium.

I've been using GAPS diet successfully over the past year. More fat and broth from meat and bones might help you.

Re sleep: I was still using small doses of klonopin up until a little over a year ago. When I began getting my typical skin rash, I decided to try pituitary. It's been brilliant. My sleep is still a bit precarious, but pituitary seems to have been a huge help. I also take hypothalamus, adrenal, and thymus glandular products. I started hypothalamus as I believed mine was damaged at the onset of ME/CFS (heat incident). It calmed my over-reactivity to heat, noise. The adrenals I started when I could no longer use any other adrenal support supps, like the licorice that I'd been using. Now supply adrenal directly. Don't know if any of this is helpful. cheers, ahmo

Re sleep: I was still using small doses of klonopin up until a little over a year ago. When I began getting my typical skin rash, I decided to try pituitary. It's been brilliant. My sleep is still a bit precarious, but pituitary seems to have been a huge help. I also take hypothalamus, adrenal, and thymus glandular products. I started hypothalamus as I believed mine was damaged at the onset of ME/CFS (heat incident). It calmed my over-reactivity to heat, noise. The adrenals I started when I could no longer use any other adrenal support supps, like the licorice that I'd been using. Now supply adrenal directly. Don't know if any of this is helpful. cheers, ahmo

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Hi Ahmo,

Thanks so much for your post. I'm curious where you get your pituitary glandular -- and other glandular products? I had an adenoma removed from my pituitary back in 2005 -- benign -- but it suggested that my poor pituitary was struggling, so I'd be interested in hearing more about the the pituitary glandular.

Try magnesium. It works for me and www.lef.org says it's required for sleep. I take my cal - mag (Nutricology) in a 1:1 ratio as citrate because citrates help you not to form kidney stones, which you can get with high vitamin C, which I need to make BH4 (it's a house of cards...gotta have all a full deck). I have taken cal-mag pills my entire life (due to vdr defect I have always had an undeniable craving for cal and due to my readings, mag has to come along for the ride, thus I have never had trouble sleeping. (Except during pms)

Thanks so much for your post. I'm curious where you get your pituitary glandular -- and other glandular products? I had an adenoma removed from my pituitary back in 2005 -- benign -- but it suggested that my poor pituitary was struggling, so I'd be interested in hearing more about the the pituitary glandular.

Thanks,

Dan

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Dan, I get my glandulars from iherb, as well as most of my other supps. Raw Pituitary, freeze-dried from New Zealand animals. I started taking thymus after reading about TH1/TH2 imbalances, and how they impact thyroid. So I figured adding thymus in was useful, and self-tested positive for it. I know you didn't ask about thymus. ahmo

I second what others say and would quit everything but do it in two stages, the first including iodine and other possible culprits like vit A which can cause toxic liver if it builds up too high. Do that for 3 days then quit the rest. When we take a lot of supplements we feel that we need them and cant function without them, but I actually felt better when I stoppped them cold turkey. I had been taking a b complex but had caused a b2 deficiency. Once I stopped everything I took a small amount of b2 like 5mg and slept like a log that night. I would start there and then add yucca for amnonia after 3 days.

I dont know if you have heard of muscle testing but this is what I do for everything. Some say that we cannot do it for ourselves but I have found it reliableand for dosage too.

Now I take a variety of things after testing them and very little tests every day apart from yucca magnesium oil and digestive bitters.

I would sort this out first before fine tuning your diet and eat your main meal at lunchtime. Since I started to do this I dont have to eat much in the evening which I feel is better for my sleep.

Oh and look at earthing, and trying a bit if time barefoot in the grass. Good luck!

thank you all for the suggestions. I have quit most of the supplements. I took some potassium, yucca, b-complex, zinc today in am. WIll take C and mag. I should look into cal/mag and see if that could help. Also b2. I feel like I am just trying so many things and nothing works. My family wants me to try more sleep meds like valium and then seroquel and start there and keep trying to find something to work.

I like earthing --but supposedly with petro chemicals under where I live, very little electrons. A doctor told me it was a dead zone. I just got a magnetico sleep pad that is the negative only side. Is 20 gauss and the earth is .58 gauss. Was recommended to me by a neurosurgeon. We shall see.

adding more carbs into my diet. Nothing helps me feel good because of sleep loss.

I have heard of muscle testing and have tried it. I don't feel I am so accurate with it. Husband has tried it on me too.

That's good to know. I always believe that it's best to start any investigation by getting possible pharmaceutical involvement out of the way first.

I am currently taking B-Right for a b complex. When I tried the Douglas Labs with methylfolate, it was too intense for me, so I tried cutting back to 1/4 capsule, and it was still too intense. Since it appears to take several days for that effect to fully calm down, at least, I'm taking an extended break from that trial, and will get back to it soon.

But I think the way to do it how one person described -- just keep cutting each dose you try in 1/2 until you can tolerate it. He/she used empty capsules to keep getting to smaller and smaller amounts, all the way down to amounts like 1/64 and smaller. This sounds like a very good method to me.

Although it may ultimately prove critical to have all the co-factors, I think each person can only do the best they can, and gradual trial and error is normal and reasonable in this process. It took me a couple of years to even try simple things like Vit E, and even then, I needed to have the test that showed I was deficient. Most people can improve more quickly if they can tolerate things more easily. But some of these, like methylfolate, are hard on almost everyone. That's comforting, in a way.

As to whether we need all the vitamins, I would rather err on the side of taking something I don't need, then missing something I do, but others may not want to do that, for whatever reason, financial or whatever. I do research, so I usually keep an eye out for whatever studies are going on and what they say about benefits of various vitamins. Sometimes it takes a long time to figure out what really is going on, like in this recent TED talk on vitamin D and sunlight -- http://www.ted.com/talks/richard_weller_could_the_sun_be_good_for_your_heart.html I found that amazing to realize.